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33rd time lucky! What now?

Breaking news! Yesterday was my 33rd and last radiotherapy session. This slightly took us by surprise, as up until our appointment with the oncologist on Tuesday we had been expecting to go until next Tuesday. I’m not complaining though! We celebrated in style with a lunch out (I went for the appropriately grown-up option of blueberry and banana pancakes), followed by a long sleep.

After 33 sessions I must have gained some sort of useful knowledge about radiotherapy. I’m going to try and share my wisdom here, followed by an idea of what’s on the horizon for me (other than pancakes and napping).

Radiotherapy Round-Up

Obviously. Source: butchbellah.com

I’ve already gone into some detail about the process involved with radiotherapy in this post, so I won’t repeat any of that here. What I didn’t really talk about were the side-effects, mainly because when I wrote it, I hadn’t experienced many yet.

As warned, I didn’t feel much from the radiotherapy for the first week or so. To compensate for that, I’ve been reassured that I will continue to feel side effects for the next couple of weeks after finishing treatment. The most noticeable change I experienced was an increasing, different kind of pain in the treatment area. Fortunately, the friendly pain team were on hand to help me get it under control, although it did take several weeks. It’s also very difficult to attribute the pain to something specific, as there is so much going on in that general area at the moment.

I went through several phases of very bad sleep. There seemed to be various reasons for this, from pain waking me up, to needing to go to the toilet several times a night. These kind of bladder issues seem to be a common side-effect of radiotherapy in this area. Excitingly, I even managed to wet the bed one night. So there go another couple of dignity points.

As I mentioned in my other post, I was promised diarrhoea at some point. This took quite a few weeks, but eventually I was on the turn and had a very watery tummy. After being prescribed some Loperamide, it seemed to settle down and I achieved a nervy sort of happy medium (just about!).

Skin changes are another side effect I’ve heard mentioned, though this doesn’t seem to have bothered me – touch wood. I’ve had a bit of a rough, bumpy rash spreading down my arms but as it isn’t itchy or sore I have mainly been ignoring it. More irritating have been the rapid changes in temperature I’ve experienced – boiling hot to shivering cold, and frequent cold sweats to boot. These seem to come on most when I’m sleeping. It’s worth saying that I have had an infection during this time, so some of the temperature issues could be due to that.

I know how you feel, mate. Source: puplak.jengawebsite.com

The main side effect that I have noticed is fatigue. I can – and do – sleep for hours and hours during the day. It wasn’t unusual for me to come back from a treatment, have lunch and then sleep for the rest of the afternoon until dinner time. This tiredness seems to also have something to do with a low haemoglobin count, as I had two blood transfusions during radiotherapy (and one just before starting it).

Now I have the longer-term effects to look forward to. These include bowel and bladder issues, bone changes and early menopause, to name just a few. But as I’m not yet at the end of my treatment, these still aren’t really my main concern. So, I hear you ask, what is happening next?

What now?

Although I was given a serious blast of radiation, both to the relevant lymph nodes and the large mass in my pelvis, my oncologist is concerned that it will not have been enough to shrink the tumour down completely as it was just too big to begin with. We won’t know for sure how well the radiotherapy has worked until my next MRI scan (coming soon), but hopefully, hopefully, fingers and toes crossed, it has shrunk it down to almost nothing.

Part of the next possible stage of treatment is now going back to surgery to try and remove what is left of the main tumour. However, the possibility of this depends on how well the radiotherapy has worked. Having met with the surgeon a week or so ago, we don’t know a huge amount more than that, other than that any surgery would probably not be straightforward or simple. The tumour has grown around my now obsolete left ovary, and all of the other organs in the area make removal tricky.

What the surgeon has done is book me in for a diagnostic operation after my upcoming MRI scan, after which he will be able to tell us what our options are. This operation will be similar to the Examinations Under Anaesthetic I’ve had before, but will include an overnight stay this time as he needs to use keyhole surgery to look into my tummy and see what’s what.

Light in the middle of the tunnel. Source: telegraph.co.uk

So the short answer is – I don’t know what’s next yet. Diagnostics, some waiting, appointments and then we’ll see what can be done. What I do know is that in the meantime, my boyfriend and I will be taking the opportunity of some hospital time off to go and have a little UK staycation at his mum’s house in Dorset. Lovely.

I hope that the time spent in Dorset was massively therapeutic for you and (?) Will. A much needed break from the monotonous routine and distressing consequences of ongoing treatment. Your supporters anxiously await the next update. They include Silver, who lies alongside, his noble moggy head cushioned by forepaws the size of frying pans. They are, as instructed, crossed.